Alan Burt

By Alan J. Burt

I recently read a book that affected me in a way that no other has. My responses to it were visceral and often resulted in tears. It brought back a lot of memories that I had kept buried for decades.

So what is it about this book that is so important? The story is related to stuttering, something that I have dealt with for as long as I can remember. My earliest memories include when I started elementary school in Toronto in 1959. I was identified as having what is now called a ‘speech dysfluency’. I started ‘speech therapy’ which consisted of being taught ‘to make sounds’, the assumption being that was that was root of my stutter. This stems from the theory that what constitutes the core stuttering “problem” is a motor-control issue (telling our muscles how to form the sounds that make up those words). Another theory involves the language element of speech (turning thoughts into words).

In my case it was an abject failure. How does a five-year-old explain to an adult that we know how to make sounds, we just can’t get words out properly? I can’t forget the other advice I received from the therapist, my parents, sister, teachers, friends, “Use your techniques”, “Take your time”, “Think about what you are going to say”. Stutterers can study, think and practice about what they want to say for as long as they want. The result? We still stutter. This strategy only reinforced the perception that stuttering was our fault for which we feel guilty. This guilt soon grows into shame. The difference? “Guilt is I made a mistake. Shame is I am a mistake”. I want to follow the author’s advice and ask: “Have you ever told a stutterer to take their time? Next time you see them, ask how ‘take your time’ feels. ‘Take your time’ is a polite and loaded alternative to say what you really mean, which is Please stop stuttering. Alarmingly, a large of amount of speech therapy still boils down to ‘Take your time’.”

I believe that my father’s lack of understanding led him to ignore it. Not until after he was regaining his speech from his second speech centre stroke did he tell me that he finally understood the difficulties that I had grown up with.

Stuttering is not a homogeneous type of hindrance. It serves as an umbrella term covering a wide range of manifestations. These include the classic stutter—the rapid-fire repetition of letters at the beginning and in the middle of words. Then, there are blocks that occur when the stutterer is unable to emit any sound.

My speech therapy lasted about 1 year. I received no further treatment until 1972. In the intervening time, I dealt with my stutter by avoiding situations where I would have to talk. That included in front of classmates, social gatherings and especially the telephone. The phone is still not a friend of mine. There were and are times when a block results in the person on the other end hanging up before I could/can get the words out. Often the toughest word for a stutterer to say fluently is one we tend to have to say the most—our name. When I was in Montreal, you had to pass French and English to graduate high school. I hoped that my fluency would be better in another language. Unfortunately, as is often the case, my stutter became worse. My French oral exam did not go well. One of the things that I feel most guilty about are the times I accepted an accommodation and avoided speaking in front of class. I only had to do it in front of the teacher. While I avoided the possible laughing and comments from my classmates, it didn’t help reduce the stutter and left me feeling like a coward. Teachers are generally not trained to deal appropriately with stuttering. In fact, they may unwittingly contribute to it!

Until very recently, stuttering was viewed as something to be fixed, solved, cured—and fast—before it’s too late. “You don’t want your kid to grow up a stutterer.” As such, most speech therapy is centred on fluency-shaping. Unfortunately, for the vast majority of stutterers, the benefits of these various fluency programs disappear within a short time after the program ends. With the expense and the fear of further failure (and guilt), these programs tend to lose their appeal to many stutterers.

In 1972, before starting university, my parents arranged for speech therapy from a local hospital. My therapist was apparently ahead of her time. She taught that there was no cure for my stutter but there were coping strategies that might work. An analogy that I recently came across sums it like this: “having a stutter is like a sidecar on a motorcycle, it is always with you.” I spent about a year learning how to make eye contact when I spoke to people. Most stutterers avoid eye contact. She also encouraged me not to dodge words I was blocked on but to finish what I started. In addition, if someone finished my sentence I would carry on as if they hadn’t. I had to take possession of what I wanted to say. I have applied coping strategies, including some of my own invention that had worked for short periods of time. I once spoke fast, like an auctioneer. It worked. Then people would ask me to repeat myself. Until about 2008 my stutter continued to adversely affect my ability to work and to effectively interact with people. After almost 4 decades of practice, I began to achieve some level of control over my speech. It is still a very touchy subject. When friends invited us to dinner the husband decided to imitate my speech. We terminated the friendship.

Other issues that can be associated with stuttering include alcoholism and drug addiction that many fall into to help deal with their depression. Many who recover are more readily able to speak about their addictions than their stuttering. After receiving treatment, they may stop drinking or using drugs but they still stutter. There is currently no magic pill cure.

To put it in perspective, about 1% of the world’s population stutters. That is about 70 million people, 3 million stutterers in the US and, about 300,000 in Canada. Since stutterers are often reluctant to admit to it, these data are probably underestimated!
Our ability to speak starts developing when we are babies. Five to ten percent of all children exhibit some form of disfluency. Some may speak without issue until the ages of two to five years. For 25% of those children, the longer the stutter persists, the harder it becomes for the stutterer to speak fluently. By the age of 10, if you still stutter, you’re likely to stutter to some extent for the rest of your life. Stuttering occurs in up to twice as many boys as girls, who have a higher recovery rate. There also appears to a strong, complex genetic component to stuttering, with two-thirds of stutterers having a family member who actively stutters or used to. I’m not aware of anyone else in my family who stuttered.
Resources for stutterers are limited. Of the roughly 150,000 Speech Language Pathologists (SLPs) in the US, fewer than 150 (<0.1%) are board-certified stuttering specialists. That’s 20,000 stutterers per specialist. The medical community disagrees on the most effective means to help stutterers, with current methods being challenged by more recent research.

Dr Courtney Byrd, at the University of Texas at Austin, is attempting to change how stuttering is treated. At the preeminent stuttering research centre in the US, Dr Byrd is teaching an alternate approach to the fluency-shaping followed by most SLPs. Stutterers are taught up front that there is no cure. One of the main steps is acceptance that you stutter. Parents of stutterers need to speak openly with their child. Stutterers are taught to build up nonverbal skills such as eye contact, strong posture, and effective body language rather than focusing on fluency. An important step is to learn not to apologize for your stutter. It is simply another part of who you are. That way, people tend look at you less negatively.

Stuttering was only formally recognized as a neurological disorder around 2000 and is now regarded as a disability. As such, it is suitable for the Canadian Disability Tax Credit if a qualified practitioner can show that the disability sufficiently restricts a basic activity of daily life.

The non-profit Canadian Stuttering Association (CSA) provides support for stutterers and their families. Insurance support is limited and speech therapy is expensive and time consuming. The CSA defines stuttering as “unexpected interruptions to the forward movement of speech; physical struggle and “tricks” to avoid stuttering; and negative thoughts and feelings and discomfort about listener reactions”. Stuttering is “not a sign of emotional disturbance or low intelligence; is not due to shyness, nervousness, lack of self-confidence, or not knowing what to say; and does not have a quick, simple solution or cure.”

If you have a stutter, remember that you are not alone and don’t have to hide it. The book I refer to is John Hendrickson’s story of his life as a stutterer. His book Life on Delay: Making Peace with a Stutter addresses his daily experiences with bullying, substance abuse, depression, isolation and other issues. His book has opened a bright light on this subject and started a dialogue that has long been lacking.